Help for extreme fatigue and stomach pain.

[Lynn Glueck]

Hi everyone,

My daughter was diagnosed 2 years ago. Her numbers were extremely high even though she only had symptoms for 1 month. Going on the gluten free diet slowly gave her some relief but she continues to have extreme fatigue and occasional upper left quadrant abdominal pain and stomach pain.  She also has started having reflux.  Her GI doctor put her on dicyclomine to see if that helps her stomach pain.  Would love any suggestions to help with her fatigue and stomach pain. As many of you know it is difficult to think of going through this the rest of your life.  

[Scott Adams]

Hi Lynn, welcome to the forum! Is it possible she's still getting small amounts of gluten via cross-contamination, perhaps at restaurants, which is very common? You didn't mention her age, but is it also possible that she cheats on her diet (my teenage daughter used to do this due to peer pressure, for example at a soccer team party where all they had was regular pizza, but I believe she no longer does this).

If you're sure that there is not gluten creeping into her diet, she could also have an additional food intolerance, for example to cow's milk, chicken eggs, corn, etc. It would be a good idea to keep a food diary and try eliminating things one by one for a week or two to see if you can find the source.

[trents]

Ditto to what Scott said. Concerning her fatigue, has she been checked for iron/ferritin levels and vitamin deficiencies? It is very common for celiacs to have vitamin and mineral deficiencies. It's been two years since her diagnosis. Has she had any follow-up testing to check celiac antibody levels or villi healing?

[Lynn Glueck]

1 hour ago, Scott Adams said:

Hi Lynn, welcome to the forum! Is it possible she's still getting small amounts of gluten via cross-contamination, perhaps at restaurants, which is very common? You didn't mention her age, but is it also possible that she cheats on her diet (my teenage daughter used to do this due to peer pressure, for example at a soccer team party where all they had was regular pizza, but I believe she no longer does this).

If you're sure that there is not gluten creeping into her diet, she could also have an additional food intolerance, for example to cow's milk, chicken eggs, corn, etc. It would be a good idea to keep a food diary and try eliminating things one by one for a week or two to see if you can find the source.

She's 22 yr old and I believe she does not cheat.  I know she has had a couple episodes of being glutened, when eating out, even when they said they are gluten free.  Is it common for a celiac individual to have another food intolerance?  

[Lynn Glueck]

1 hour ago, trents said:

Ditto to what Scott said. Concerning her fatigue, has she been checked for iron/ferritin levels and vitamin deficiencies? It is very common for celiacs to have vitamin and mineral deficiencies. It's been two years since her diagnosis. Has she had any follow-up testing to check celiac antibody levels or villi healing?

Yes, her dr did a full panel which showed no deficiencies.  She did have another endoscopy which showed good healing of her villi and her antibody level was 31.  

[trents]

Which antibody level was 31 and what is the reference range for that? There is more than one antibody test that can be done for celiac disease. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Yes, the development of other food intolerances is very common in the celiac community. Dairy, egg and soy and corn are very common ones but it can be almost anything.

[Lynn Glueck]

33 minutes ago, trents said:

Which antibody level was 31 and what is the reference range for that? There is more than one antibody test that can be done for celiac disease. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Yes, the development of other food intolerances is very common in the celiac community. Dairy, egg and soy and corn are very common ones but it can be almost anything.

The test they did was ITG IgA AUTOAb.  The range says <20.   That test was 9 months ago.

[trents]

Lynn,

Did you mean "tTG-IGA"? If the reference range is <20, 31 would mean she is still getting inflammation in the small bowel.

[Lynn Glueck]

11 hours ago, trents said:

Lynn,

Did you mean "tTG-IGA"? If the reference range is <20, 31 would mean she is still getting inflammation in the small bowel.

Yes, that is the test she had done.  So I guess we should have that test repeated to see where her number is and try to figure out where she is getting some contamination from.  Do you know of anyone who still has fatigue even when their tTG-IGA is normal?  

[trents]

Yes, I would get that test repeated so that you have a current assessment. And as Scott said, I would also be on the lookout for other food intolerances that might be causing gut inflammation. I would consider eliminating dairy to start with and see if the pain goes away. Many celiacs can't tolerate dairy. If dairy isn't the culprit, try eliminating chicken eggs. If that doesn't help, try eliminating soy, then corn. Keeping a food diary is helpful in finding an association between what was eaten in the last 24 hrs. and the times when the pain was worse. In my own experience, I have developed a sensitivity to chicken eggs over the years of being a celiac. I can eat one egg without much issue but more than that gives me a major stomach ache and GERD. So what I am saying is that many of these foods are difficult or impossible to totally eliminate from one's diet unless you totally eliminate all processed food (because they are so commonly used as incidental ingredients) but eliminating large sources may help. And even though a follow-up biopsy has shown good progress in villi healing it can take two years or more for the villi to completely heal. Being "glutened" can set that back and especially if one is getting regular small amounts of gluten from unknown sources. All medications and supplements should be checked as wheat starch is commonly used as filler in pills. Some people report transdermal glutening through cosmetics and health and beauty aids. 

Let me ask this question: Is everyone else in your daughter's household eating gluten free? The chances for cross contamination are very high if not. Using the same utensils to cook, handle, cut, etc. for gluten free food that has been used for wheat containing products is a source of cross contamination. And eating out should be totally avoided if at all possible. The best approach is to focus on eliminating eating out and processed foods, even so-called "gluten-free" processed foods, and to eat only simple fresh foods like veggies, meat and fruit. Keep in mind that even spices can have gluten as wheat is often used as a texturing agent. And foods that are "natually gluten free" can be a source of cross-contamination. For example, nuts can be processed on the same equipment as things containing wheat, barley and rye. Oatmeal can be cross contaminated with wheat/barley/rye in the growing, transportation and processing phases. Packaged cereal products based on corn and rice can contain gluten because they may use "malt flavoring." And about 10% of celiacs cannot eat gluten free oats because they react to the protein in oats which is biochemically similar to gluten. So lots of things to look at closely with regard to food products. It is not enough to just cut out major sources of gluten such as bread and pasta. It's the cross contamination that prevents many celiacs from healing well.

The fatigue may be associated with a food intolerance or it may be something else. But the food diary may help with that. We are finding out that the gut is a major player in our overall health and well-being. When the gut ain't happy, the whole body suffers. In my own experience for example, when my gut is unhappy it can trigger migraines. It might be fair to say that the gut is the master organ of the body in some ways.

Another thing to be aware of is the fact that celiacs commonly develop other autoimmune diseases over time, like Hashimoto disease. Has your daughter had her thyroid hormone levels checked?  There is a statistical correlation between celiac disease and diabetes, lupus and even MS. These are just some examples. The genes that permit the development of celiac disease are located near genes that are responsible for some other autoimmune diseases. Has she been evaluated for CFS (Chronic Fatigue Syndrome)? 

Edited September 24, 2021 by trents

[Ivana]

1 hour ago, trents said:

Yes, I would get that test repeated so that you have a current assessment. And as Scott said, I would also be on the lookout for other food intolerances that might be causing gut inflammation. I would consider eliminating dairy to start with and see if the pain goes away. Many celiacs can't tolerate dairy. If dairy isn't the culprit, try eliminating chicken eggs. If that doesn't help, try eliminating soy, then corn. Keeping a food diary is helpful in finding an association between what was eaten in the last 24 hrs. and the times when the pain was worse. In my own experience, I have developed a sensitivity to chicken eggs over the years of being a celiac. I can eat one egg without much issue but more than that gives me a major stomach ache and GERD. So what I am saying is that many of these foods are difficult or impossible to totally eliminate from one's diet unless you totally eliminate all processed food (because they are so commonly used as incidental ingredients) but eliminating large sources may help. And even though a follow-up biopsy has shown good progress in villi healing it can take two years or more for the villi to completely heal. Being "glutened" can set that back and especially if one is getting regular small amounts of gluten from unknown sources. All medications and supplements should be checked as wheat starch is commonly used as filler in pills. Some people report transdermal glutening through cosmetics and health and beauty aids. 

Let me ask this question: Is everyone else in your daughter's household eating gluten free? The chances for cross contamination are very high if not. Using the same utensils to cook, handle, cut, etc. for gluten free food that has been used for wheat containing products is a source of cross contamination. And eating out should be totally avoided if at all possible. The best approach is to focus on eliminating eating out and processed foods, even so-called "gluten-free" processed foods, and to eat only simple fresh foods like veggies, meat and fruit. Keep in mind that even spices can have gluten as wheat is often used as a texturing agent. And foods that are "natually gluten free" can be a source of cross-contamination. For example, nuts can be processed on the same equipment as things containing wheat, barley and rye. Oatmeal can be cross contaminated with wheat/barley/rye in the growing, transportation and processing phases. Packaged cereal products based on corn and rice can contain gluten because they may use "malt flavoring." And about 10% of celiacs cannot eat gluten free oats because they react to the protein in oats which is biochemically similar to gluten. So lots of things to look at closely with regard to food products. It is not enough to just cut out major sources of gluten such as bread and pasta. It's the cross contamination that prevents many celiacs from healing well.

The fatigue may be associated with a food intolerance or it may be something else. But the food diary may help with that. We are finding out that the gut is a major player in our overall health and well-being. When the gut ain't happy, the whole body suffers. In my own experience for example, when my gut is unhappy it can trigger migraines. It might be fair to say that the gut is the master organ of the body in some ways.

Another thing to be aware of is the fact that celiacs commonly develop other autoimmune diseases over time, like Hashimoto disease. Has your daughter had her thyroid hormone levels checked?  There is a statistical correlation between celiac disease and diabetes, lupus and even MS. These are just some examples. The genes that permit the development of celiac disease are located near genes that are responsible for some other autoimmune diseases. Has she been evaluated for CFS (Chronic Fatigue Syndrome)? 

Trents, I really appreciate all your advice and continuous help on the forum. However, repeating things like "most" celiacs develop other food intolerances (this might have not been said by you personally), or celiacs "commonly" develp other AI diseases really triggers me and my health anxiety. Is that for a fact? How so, if most celiacs remain undiagnosed? Even if there is a correlation, it does not have to signify the majority of celiacs. What, I think, is a fact, is that people develop intolerances (digestion is just not up to speed as in youth) and chronic diseases as they get older, and it does not have to be due to the fact that one is a celiac. So far, to my knoweldge, I "only" have celiacs, and I'd hate to think that as "most" celiacs, I will develop this and that in the future. Maybe only as "many", but not "most" older people, yes. That somehow doesn't sound as scary and abnormal.  

[trents]

Perhaps "most celiacs" is an overstatement when applying it to development of other autoimmune diseases and food intolerances. But you don't have to hang around this forum very long to understand that these attendant conditions are very common to the celiac community. There is a statistical correlation between celiac disease and the development of other autoimmune conditions even when other factors are taken into consideration such as age.

Edited September 24, 2021 by trents

[Ivana]

12 minutes ago, trents said:

Perhaps "most celiacs" is an overstatement when applying it to development of other autoimmune diseases and food intolerances. But you don't have to hang around this forum very long to understand that these attendant conditions are very common to the celiac community. There is a statistical correlation between celiac disease and the development of other autoimmune conditions even when other factors are taken into consideration such as age.

Yes, I understand that, but there is still the question whether most celiacs are on this forum, or whether there are still many around who don't post and don't have these conditions, and then also many who don't even know they have celiacs and also don't have these conditions. Maybe it is a professional deformation, but I am a bit sensitive to how data is collected and interpreted. Or maybe it is just my wishful thinking 😅.

[trents]

Even if most celiacs are not on this forum, you must admit that this forum represents a very large statistical base. No research study can survey or test all people who have a given medical condition but the larger the test base the more weight it's findings carry.

[Ivana]

48 minutes ago, trents said:

Even if most celiacs are not on this forum, you must admit that this forum represents a very large statistical base. No research study can survey or test all people who have a given medical condition but the larger the test base the more weight it's findings carry.

Again, this can indicate an increased incidence. (Although, there are 98000 members here; how many of them said that they have an additional AI, exactly? And for how many it is only others here that suggested something like that without an official diagnosis by a doctor? Also, some conditions like Hashimoto are rather frequent in general populaton too. Long descriptions and threads about someone's symptoms can easily imprint in one's memory, but perhaps their authors do not form the majority of the members here.) So, in my opinoin, increased incidence does not warrant constant repeating that most celiacs are like this or like that like it is some sacred truth. People come on here with various symptoms, and it is indeed helpful to make them aware of all the possibilities these symptoms could be (although, ideally doctors should be the ones to do that), but this could be relayed to them in less absolute terms. More studies might eventually prove that most celiacs are like this or like that (when more of the presumed undiagnosed celiacs are diagnosed and included), but until that is the case, I think it is better to use such generalisations with caution as they can sometimes only bring unnecessary anxiety.

[trents]

Thank you for your input.

[Ivana]

14 minutes ago, trents said:

Thank you for your input.

I guess I am just really hoping some things not to be the case, which is not very scientific either, and am perhaps also more afraid of some of these conditions (even if they occur) than I should be. Thank you also for your input.

[trents]

I understand. I hope you are not one of those who develop additional food intolerances or additional autoimmune diseases. I am sorry if I added to your anxiety by my choices of words. We still live one day at a time and need to deal with challenges one at a time as they come. I certainly agree that it is not good to worry about things that may not happen. But to be aware of what could happen is also a good thing.

[Scott Adams]

I just want to mention that in many cases such additional food intolerances are often temporary, and can go away if someone maintains a strict gluten-free diet. On my case it was dairy/casein, corn, chicken eggs and tomatoes, and after around 1-2 years I was able to add them back, with the exception of chicken eggs, which I can tolerate once per week, but I get issues if I eat them more often (I switched to duck eggs). 

[knitty kitty]

Have you read about the side effects of dicyclomine?  

I did not like the side effects.  I felt like a zombie.  Gabapentin might be a better choice.  Not a doctor, not medical advice, just my personal experience.

https://www.drugs.com/tips/dicyclomine-patient-tips

 

Vitamin deficiencies can develop on the Gluten Free Diet.  

GERD or reflux has been connected to a deficiency of Thiamine (Vitamin B1). 

That upper left quadrant pain is where the pancreas is located.  Thiamine deficiency has been associated with pancreatic problems.

Thiamine is needed to convert our food into energy.  Thiamine deficiency can manifest as fatigue.

Was your daughter tested for thiamine deficiency by a blood test?  Blood tests for thiamine reflect how much thiamine was consumed in the previous twenty-four hours.  The erythrocyte transketolase test is more accurate but rarely done.  Doctors tend to overlook vitamin deficiencies and their correction.  They frequently test only Vitamin D and B12 levels.  

[notme]

54 minutes ago, knitty kitty said:

Have you read about the side effects of dicyclomine?  

I did not like the side effects.  I felt like a zombie.  Gabapentin might be a better choice.  Not a doctor, not medical advice, just my personal experience.

https://www.drugs.com/tips/dicyclomine-patient-tips

  

i agree about the dicyclomine - i have a prescription for it in case of extreme spasms, but i am loathe to take it because there is a whole day lost   i could never take it daily.....

[knitty kitty]

I'm posting this article here for future readers who may have questions about the connection between Celiac and other Autoimmune diseases.  

"Celiac Disease and Autoimmune-Associated Conditions"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3741914/#sec3title

 

[knitty kitty]

What type of gluten free diet is your daughter consuming?

I had excellent results on the AutoImmune Protocol diet.  It is basically a meat and veggies diet. It excludes legumes (beans), nuts and seeds, and grains, even gluten free "safe" grains, and nightshades (potatoes, tomatoes, peppers and eggplants), dairy and eggs.  

 "AIP (Autoimmune Protocol) Diet: Overview, Food List, and Guide"

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And...from the doctor with Celiac who invented the diet to help her own family....

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

 

 

[trents]

Thanks for that resource, kk. Good read.

[Lynn Glueck]

Thank you everyone for all the information.  We have a lot to look at to help her move forward.  We are so glad to have this wonderful resource of people who are willing to share and help others.